Experiences with
Ehlers-Danlos syndromesSymptoms of Ehlers-Danlos syndromes (EDS)
There are several types of EDS that may share some symptoms.
These include:
- an increased range of joint movement (joint hypermobility)
- stretchy skin
- fragile skin that breaks or bruises easily
EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.
Treatment for Ehlers-Danlos syndromes (EDS)
There's no specific treatment for EDS, but it's possible to manage many of the symptoms with support and advice.
People with EDS may also benefit from support from a number of different healthcare professionals.
For example:
- a physiotherapist can teach you exercises to help strengthen your joints, avoid injuries and manage pain
- an occupational therapist can help you manage daily activities and give advice on equipment that may help you
- counselling and cognitive behavioural therapy (CBT) may be useful if you're struggling to cope with long-term pain
- for certain types of EDS, regular scans carried out in hospital can detect problems with internal organs
- genetic counselling can help you learn more about the cause of your condition, how it's inherited, and what the chances are of passing it on to your children
Your GP or consultant can refer you to these services.
Self-refer for treatment
If you have Ehlers-Danlos syndromes, you might be able to refer yourself directly to services for help with your condition without seeing a GP.
To find out if there are any services in your area:
- ask the reception staff at your GP surgery
- check your GP surgery's website
- contact your integrated care board (ICB) – find your local ICB
- search online for NHS treatment for Ehlers-Danlos syndromes near you
Living with Ehlers-Danlos syndromes (EDS)
It's important to be careful about activities that put a lot of strain on your joints or put you at risk of injury.
But it's also important not to be overprotective and avoid living an otherwise normal life.
Advice will depend on which type of EDS you have and how it affects you:
- you may be advised to avoid some activities entirely, such as heavy lifting and contact sports
- for some activities you may need to wear appropriate protection and be taught how to reduce the strain on your joints
- lower-risk activities, such as swimming or pilates, may be recommended to help you stay fit and healthy
- if fatigue is a problem, you can be taught ways to conserve your energy and pace your activities
How Ehlers-Danlos syndromes (EDS) are inherited
EDS can be inherited, but it happen by chance in someone without a family history of the condition.
The 2 main ways EDS is inherited are:
- autosomal dominant inheritance (hypermobile, classical and vascular EDS) – the faulty gene that causes EDS is passed on by 1 parent and there's a 1 in 2 chance of each of their children developing the condition
- autosomal recessive inheritance (kyphoscoliotic EDS) – the faulty gene is inherited from both parents and there's a 1 in 4 chance of each of their children developing the condition
A person with EDS can only pass on the same type of EDS to their children.
For example, the children of someone with hypermobile EDS cannot inherit vascular EDS.
The severity of the condition can vary within the same family.
SymptomsMedical treatmentsSelf-careCausesCommon symptoms of Ehlers-Danlos syndromes include unusually flexible joints and skin that stretches and breaks easily.
There's no cure for Ehlers-Danlos syndromes. But support from professionals like physiotherapists can help you manage your symptoms.
If you have EDS, there are activities you can do, however you should be careful and not put too much strain on your joints.
Ehlers-Danlos syndromes are often inherited from your parents.
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